#and there was that time i got mrsa bc of it and almost died and i guess THAT sucked too | Explore Tumblr Posts and Blogs

deathsbestgirl · 9 months

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so some of my medical history:

lyme disease when i was 10

mono right after (one kid i was never near in the county had it)

a weird ass contagious skin disease that was very contagious so i couldn't go to school (easily treatable) that no one else in the county had

diagnosed with a type of arthritis when i was 15 (the "treatment" didn't help)

i've had 4 surgeries for cysts (ganglion cysts both wrists, left side lypoma, cholestiatoma in my left ear)

tubes in my ears 3 times

2 surgeries to replace the bone in my left ear (i'm HOH)

MRSA my freshman year of college (not allowed at school)

junior year? i started getting treated for chronic lyme (controversial) was on multiple antibiotics for 4 years, went gluten free, no sugar, very little caffeine, got cdif (colitis) (almost died) had to stop that route. tried chinese medicine (garlic & herbs) was taking chlorophyll with too much copper, got copper poisoning & almost died (when my dad was first diagnosed with cancer no less) stopped that course too. (also did a whole miserable diet that i can't even talk about bc i really like food & that also almost killed me bc i didn't want to eat ever)

did acupuncture for years, that was the MOST helpful. she improved my period, helped make my diet tolerable, improved my pain & migraines by leagues, etc etc

pretty sure i have pots, maybe eds but i haven't tried to get diagnosed because ... i hate doctors with a burning passion. my biggest problem now is fainting & allergies lol and liquid iv & compression socks have actually made the biggest difference. used to survive on gatorade & pedialyte. and i need to go back to acupuncture

i'm always in pain (muscles, joints literally all of them) but you learn to live with it. and my very helpful doctors told me to ignore that pain when i was 15 & said fatigue was normal. so um. yeah

i feel like i've buried most of the memories, like they were years ago at this point but they feel like another life sometimes.

it's so isolating and if i didn't have two really good friends at home when i left college, i don't know how i would have made it. they would come over basically everyday and we'd watch tv & hang out, they'd make sure i ate & help me clean etc etc (i had the downstairs apartment if my parents house most of the time and *thankfully* my family was always helpful & understanding, my mom fought so hard for me) my mom & my friends could tell how i was feeling without my having to saying a word about it.

it absolutely kills me every time i read about what others deal with when they have chronic illnesses because that just. is not how anyone should be treated when they're sick & in pain. i remember being 15 and the whole world telling me "you can't be sick all the time" like literally yes you can you dumb fucks. again, thankfully i had some great teachers who made so many allowances for me (letting someone leave class early with me because i couldn't walk or carry my stuff but i had no aids or plan with the school. sometimes teachers that weren't even mine let a friend leave their class. one teacher didn't make me read a tale of two cities because i missed the whole unit) i had another friend going through hell. she has crohn's disease and she almost went blind and it took a long time for her to get diagnosed too.

one of those days i'm just mad at the world. this post doesn't really have any purpose other than to say listen to disabled people, especially the ones in your life. and if you can help them then you should. it's isolating & exhausting & painful in so many ways. people shouldn't lose friends because of their health. they shouldn't be guilted because of their health. health isn't an achievement, it isn't something you can control even if you do everything you possibly can. some things we just have to live with.

#personal

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